QUESTION & ANSWER
Exchange

with author
Greg Palmer

Recently, Woodbine House provided
our readers the opportunity to pose questions to Greg
Palmer, author of
ADVENTURES IN THE MAINSTREAM: Coming of Age with Down Syndrome,
and father of Ned, a young adult with Down syndrome. Those Q&A
exchanges appear here. If you would like to find out more about
this book, please
click here.
Thanks to our readers for their interest in this engaging title
and to Greg Palmer for taking the time to thoroughly respond to
each question.

How is
Ned doing at his job in the mailroom?

Alas, the
job in the mailroom disappeared. Ned was doing it and doing it
well, but the television station decided they really wanted
someone full time in the mailroom who could also be involved in
building maintenance chores, so Ned's contract wasn't renewed.
We are just now beginning the active pursuit of another job for
him. He describes his current occupation as singer/songwriter.

Does Ned see
himself as being married someday? How does he view marriage or
a relationship?

He most
certainly sees himself as some day marrying, although he never
describes his girlfriend of many years as his fiancée, and their
relationship is strictly platonic. He also sees himself having
children of his own. I think and hope the former will happen (I
once did a news piece about a married couple, both with Down
syndrome, and they seemed to be doing fine with a little
governmental help, and a lot of support from their church.) His
telling me the other day that he was saving all the books he
hasn't read since he was small for his own children broke my
heart. In some ways Ned would be a wonderful father. He loves
children, especially very young children; loves teaching them
and being around them. But of course that will never happen, and
he has no realization of that at all.
I think the concept of
having a relationship is very important to him--important for
him to be able to say he has a girlfriend--even if the mechanics
of it don't interest him in the least. As far as I know, he has
never initiated a phone call to his girlfriend, and has a
tendency to mutter unhappily when called to the phone because
she has called. Their dates are few, and almost always initiated
by her. But her existence is something he never fails to mention
when need be. The down side is that, though I think she would be
an inappropriate mate for him--not nearly as functional as he
is--her presence precludes him from even considering other
possibilities.

The way you
describe Ned in the book, it sounds like he has really good
speech. What did you do with him when he was younger to help his
speech develop? e.g., did you take him to private speech
therapy, do oral-motor exercises, etc.?

We have been
extremely lucky that Ned has never really needed any speech
work; he has always spoken well. I think they did some work very
early on when he was at the Experimental Education Unit at the
University of Washington, and I think his years of singing
lessons also helped, but in the main Ned just hasn't had any
speech challenges. It could also be part of being around many
people who talk a lot.

Aren't you
concerned about all the nitrates Ned is getting by eating so
many hot dogs? Have you tried switching him to veggie hot dogs?
What would happen if you just refused to buy hot dogs for
breakfast and he either had to eat something else or go hungry?

I've been
concerned about the hot dogs for more than 20 years now, and
kept seeking support from his otherwise splendid pediatrician,
who never seemed that concerned. We do veggie dogs sometimes
--though he knows and dislikes the difference--and turkey dogs
as well. And frankly, we've never had the nerve to just refuse
to get the dogs. But part of that is being intimately aware of
Ned's awesome stubbornness about some things, and food is
definitely one of those things. I think we would lose such a
confrontation. Also, what he eats is one of the few things in
his life over which he has considerable control, and we are
reluctant to remove the controls he actually has. But you are
exactly right that the hot dogs have bothered me, and not just
the smell of a microwave hot dog at 7 in the morning.

Like your
son, my daughter isn't really interested in any physical
activities. She would sit in front of the TV, the computer, or a
book all day if we let her. Have you figured out any strategies
to motivate Ned to get more exercise that you could share?

Sort of.
Seeing his parents do more exercise--especially his inherently
sedentary father--has helped. When we go to the movies, for
years I've made a point of parking 8-10 blocks away so he has to
walk it. And I have told him we are going to start going on
walks when there isn't a movie at the end--around the
neighborhood, etc.,--which we have in fact begun. We now walk up
a six block hill to the video rental store, or we don't go
there. Also, he has a tri-com--a kind of three-wheeled
bicycle--which he now rides around a lake once or twice a month,
with his mom on a regular bike beside him. And he bowls once a
week. So slowly we are getting more physical activity into his
life.

Parents and
advocates are increasingly pushing for people with DS to be
“included” in all aspects of “normal” community life—from
schools, to recreation programs, to jobs. Is this a realistic
goal?

I could do
fifty pages on this subject and never really answer the
question. It’s a realistic goal for some people, though
certainly not the majority. (The question also presumes that all
DS people have the same ability to adapt to “normal life.” This
is ludicrous. And all black people don’t have rhythm, either,
nor do all Italians talk with their hands.) In school Ned did a
lot with the non-Special Ed kids, and these experiences were
almost always extremely positive, most beneficial for Ned, just
as his membership now in a “normal” community choir is going
very well. At the same time I have seen kids with DS hopelessly
lost and miserable in mainstream situations, which was good for
neither the kid nor the people he or she was with. For it to
work, it takes a great deal of extra effort on the part of
parents, caregivers, teachers, employers, etc. For instance,
Ned was once mainstreamed in a high school American History ESL
class. We worked with the sympathetic teacher almost daily to
devise assignments that were suitable for him (not easier
assignments, but assignments that dealt with comprehension
rather than language challenges.) The class was a success for
Ned, but it certainly wouldn’t have been had we just dumped him
there and hoped for the best. My problem with parents who insist
their children with DS be treated exactly like everyone else is
that the overwhelming majority of those parents I’ve known were
really driven by an inability to accept their child’s
disability. They felt like just having the child was an
indication of some kind of failure on their part, and were
handling that by ignoring reality. Ironically, they were
demanding respect for their child’s abilities when in fact they
didn’t have that respect themselves.

In your book
you describe moments when Ned is perceived and treated by
strangers both positively (on your cruise around the British
Isles) and negatively (on a packed plane people avoided the
empty seat next to him). Overall, how do you feel about the way
Ned has been received by people who don’t know him?

I think Ned
has been extremely lucky in the way people have treated him, for
many reasons. We’re lucky to live in a part of the world where
people at least try to be nice to each other. And Ned almost
always exceeds the expectations of the strangers he meets. It is
not coincidental that the people who declined to sit beside him
on the plane didn’t meet him, they made a snap judgment just by
looking at him. The man who eventually sat between us had a nice
conversation with Ned about a variety of things for almost the
entire flight. Finally, and perhaps most important, Ned won’t
let people dismiss him. He bores in on them, because it never
occurs to him that we aren’t all equal in everything. When Ned
was around 18, I introduced him to Paul Schell, then the Mayor
of Seattle. “Mayor Schell,” I said, “this is my son, Ned.”
Schell looked at Ned, and in his biggest, clearest voice as if
he were speaking to a four-year-old, said “Ned, how do you do?”
And Ned said, “Paul, nice to meet you.” Equals.

Did you and
your wife find yourselves raising or treating Ned differently
from your other son Ira? How alike, in spite of their
differences, are Ned and Ira (if that's not too personal)?

I've said
before--maybe in the book, I forget at the moment--that there
wasn't that much difference in raising Ned and raising Ira, just
that the Ned experience was more intense, and the various
developmental stages lasted longer--in fact, will not ever end,
as opposed to Ira, who is out of the house and has been for
years. That's the short version of the differences in raising
them; the long version would take many pages, but come to the
same conclusion. And they really aren't alike much. They both
have good senses of humor (thank God) and laugh at some of the
same things. Neither is very competitive, which is why Ned has
never been involved in Special Olympics or any other team sport,
and when he bowls, never pays the slightest attention to the
scores of his fellow bowlers, but only to his own score. Ira was
on his high school and college football teams, but I think the
appeal for him was almost entirely the beneficial experience of
being on a team, not the thrill of victory or the agony of
defeat (which is good, because both in high school and college
his teams were simply awful and there was very little thrill
mixed with the agony.) They both like to read, they like movies
and music but have entirely different tastes in both areas, and
that's about it. And I don't think their lack of similarities
has much if anything to do with the fact that one is very
bright, and one is developmentally disabled. They are just
different people, one (the ham) taking after his father, while
one, the quiet one, taking after his mother.

It was
really inspiring to read about Ned's guitar playing and song
writing talents. Has Ned written any more songs or has he been
doing any performing anywhere? (Also, did you know that there's
a music conservatory just for young people with disabilities—the
Berkshire Hills Music Academy? (Any thoughts of sending Ned
there?)

Ned writes
songs practically daily--or I assume he does, because he
occasionally refers to them, even as he never shows me the songs
or performs them for me. Most recently he performed an original
composition as part of an evening performance at a senior center
by the community choir of which he was a member. (He sang a solo
with guitar, after first auditioning the number and the
performance for the choir director.) I'd never heard of the
Berkshire Hills Music Academy. I'll check it out, and thanks...

Ned is quite
a remarkable young man in many ways – he plays two musical
instruments, can recite poetry by heart, and is an expert on
pre-1966 rock ‘n roll. Is he a typical young adult with Down
syndrome? Do you think these interests and talents are going to
help him to be more independent in the future?

I don’t know
what’s typical. I’ve met many people with Down syndrome who
didn’t seem as functional and intellectually developed as Ned,
just a few who I thought were his equal, and none who I thought
was more functional—which could just be a father’s ego talking.
But I’ve always avoided such comparisons, because they have the
stench of “my kid’s better than yours.” Anybody who reads Adventures in the Mainstream will meet a father who
is proud of his son and not at all reticent about singing his
praises and describing his triumphs, but I certainly hope the
message from that is not “my kid’s better than yours.” I hope
the message is, “Find what’s great about your kid, and we’ll
sing of them together.” And yes, of course I think Ned’s talents
will help him; they’ve already helped him. There’s a lot to be
said for a profound and unflagging curiosity about almost
everything, combined with a great spirit, a great memory, and a
great heart.

If you could
give advice to new parents of kids with Down syndrome, what
would you say to them?

The first
thing I would say is what a very great lady said to me on the
day we learned Ned had Down syndrome: “It’s not the end of the
world.” Or to paraphrase what Emily Perl Kingsley once said:
“You thought you were flying to Italy. You were set for Italy,
you’d studied the language, knew the sights you wanted to see.
And then you landed in Holland. Not Italy. A different place.
Not necessarily a bad place, just not what you were expecting.”
And I would add, “So learn some Dutch, and get on with it.”
I would also say this: If
you let it happen—and that’s a big but crucial if—there will be
joy, and laughter, and sorrow, there will be tragedies but also
triumphs. As quickly as you can, get over your self-pitying
belief that the gods have screwed you. Embrace people who
embrace your child, and ignore the others. Especially ignore
those who want to show you how compassionate they are by sharing
your tragedy. You don’t have a tragedy, you have a child, and
you can get as much satisfaction from that child as you’d get
from any child. But there’s no question you’ll have to give
more; give more of your life, of your time, of your energy, of
everything you have, if you want to make that child’s life a
success. In other words, you’re about to find out just what kind
of person you really are.